“None of us are lying”: an interpretive description of the search for legitimacy and the journey to access quality health services by individuals living with Long COVID

Abstract

Background Understanding of Long COVID has advanced through patient-led initiatives. However, research about barriers to accessing Long COVID services is limited. This study aimed to better understand the need for, access to, and quality of, Long COVID services. We explored health needs and experiences of services, including ability of services to address needs. Methods Our study was informed by the Levesque et al.’s (2013) “conceptual framework of access to health care.” We used Interpretive Description, a qualitative approach partly aimed at informing clinical decisions. We recruited participants across five settings. Participants engaged in one-time, semi-structured, virtual interviews. Interviews were transcribed verbatim. We used reflexive thematic analysis. Best practice to ensure methodological rigour was employed. Results Three key themes were generated from 56 interviews. The first theme illustrated the rollercoaster-like nature of participants’ Long COVID symptoms and the resulting impact on function and health. The second theme highlighted participants’ attempts to access Long COVID services. Guidance received from healthcare professionals and self-advocacy impacted initial access. When navigating Long COVID services within the broader system, participants encountered barriers to access around stigma; appointment logistics; testing and ‘normal’ results; and financial precarity and affordability of services. The third theme illuminated common factors participants liked and disliked about Long COVID services. We framed each sub-theme as the key lesson (stemming from all likes and dislikes) that, if acted upon, the health system can use to improve the quality of Long COVID services. This provides tangible ways to improve the system based directly on what we heard from participants. Conclusion With Long COVID services continuously evolving, our findings can inform decision makers within the health system to better understand the lived experiences of Long COVID and tailor services and policies appropriately.

Exploring the perceptions and experiences of community rehabilitation for Long COVID from the perspectives of Scottish general practitioners’ and people living with Long COVID: a qualitative study

“…We identified several systemic challenges for LC service delivery which related to access, siloed services, limited resources and a perceived lack of holistic care, causing frustration for both GPs and people with LC. Similar challenges have been reported in the international qualitative literature from the perspectives of people with LC [30][31][32] and healthcare professionals. 33 To our knowledge, this is the first study to focus on community rehabilitation in Scotland.…”

People from ethnic minorities seeking help for long COVID: a qualitative study

“…Typical experiences for people living with Long Covid, regardless of ethnic background, include difficulties accessing healthcare, not being believed by their doctor, lack of understanding or knowledge of Long Covid from their doctor, overstretched and complex health systems, and needing to advocate to get care [8][9][10]12,13 . People from ethnic minority backgrounds experienced additional burdens associated with Long Covid, particularly linked to fearing prejudice from others (within the community and healthcare).…”

“…Symptoms can be physical, cognitive, or psychological 5 with debilitating impacts on people's daily lives [5][6][7] . People living with Long Covid describe difficulty accessing healthcare or feeling that they are not believed by General Practitioners (GPs) [8][9][10][11][12] . GPs describe their own challenges managing people with Long Covid 13 .…”

“…People living with Long Covid experience stigma 12,25 where they are devalued or discredited by society because of their condition 26 . Stigma is not an uncommon experience for people living with health conditions which have a history of sensationalism in the media, such as mental health difficulties or HIV 27,28 .…”